Running 4 Edwardhttps://run4edward.wordpress.com
Raising awareness of newborn SVT and the cooling treatmentTue, 25 Jul 2017 20:02:18 +0000enhourly1http://wordpress.com/https://secure.gravatar.com/blavatar/588f2da055b87ae1220d2c312d9dd55f?s=96&d=https%3A%2F%2Fs2.wp.com%2Fi%2Fbuttonw-com.pngRunning 4 Edwardhttps://run4edward.wordpress.com
Edwards birth storyhttps://run4edward.wordpress.com/2013/02/28/edwards-birth-story/
https://run4edward.wordpress.com/2013/02/28/edwards-birth-story/#respondThu, 28 Feb 2013 07:35:46 +0000http://run4edward.wordpress.com/?p=22]]>It’s not finished but it so long I thought I would post it in instalments. Please remember its a happy ending

Dear Edward,

I’m writing you a letter to tell you all about your birth. It was such a difficult time for your daddy and me, it’s going to be hard to write about it. You are nearly 7 months old now and such a happy baby. It still brings tears to my eyes thinking about you laying in your incubator but I need to write this down, it’s weird but I don’t want to forget anything, even the bad parts.
You are our planned 3rd baby. We fell pregnant the month we decided to have a 3rd! How lucky is that! I was sooooo tired while I was pregnant, working night shifts and looking after your big sister Joscelyn and big brother Hayden was exhausting. You were such a fidgety baby, you would poke out a knee or elbow and it would actually hurt! I loved showing daddy your acrobatics! Every thing was going great. At 33 weeks you stopped moving as much, I started feeling more tired, emotional and run down. I felt as if I was full term but still had 7 weeks left! You stopped moving around as much and I thought it was because you we’re getting bigger and had less space. A week later i was 34 weeks pregnant and I still felt bad. you were still not very active so I went to the midwives. They monitored you for 45 minutes and you were fine your heart rate was 135bpm. That’s normal! They said I had a kidney infection and gave me antibiotics. I took them for 4 days and u still didn’t move much. I used my hand held heart monitor and heard your heart beating so fast I couldn’t count each beat. I lay down for 20 mins then tried it again and it was back to 135bpm. I thought I had listened wrong. I didn’t get much sleep that night. The next day was Friday, I was 35 weeks pregnant and felt like some thing still wasn’t right. The heart monitor had worried me so I decided to see the midwives again. I asked daddy to stay home from work as I felt so bad and called the midwives again. They made me an appointment for a scan at lunch time. I sat at home and wrote a “to do” list of all the things I wanted to do before your birth!

Daddy dropped me off for the scan with the big kids in the car. I didn’t mind going alone, I didn’t actually believe any thing would be wrong. I was confident they would say you were getting big and didn’t have much room to move. In fact I was worried they would be cross that I made a fuss! I went in to the scan and the lady started scanning, I told her you hadn’t been moving much for 2 weeks. She didn’t scan for long before saying she needed some one with her. I was worried, a more senior lady came and stated scanning me. She pointed out your heart and how quick it was beating and how big your tummy looked. I remember making a funny noise as I tried not to cry. She rubbed my shoulder and said it was ok to be worried. I think she mentioned delivering u ASAP. She scanned a bit longer and said she needed to do the report then would explain to me in non medical terms. She didn’t know I was a nurse. She said ascites (fluid around your tummy), SVT(heart beating too fast and irregular), pleural effusion (fluid around your lungs), all words I knew. I think it only took a few minutes, they bleeped the consultant to come and have a look then led me into an empty office so I could ring your daddy. I called him and said there was some thing wrong with your heart, that it was beating too fast and he need to come. Then I called my mum and asked her to look after the big kids. The sonographer talked to me about the Olympics. The dr didn’t take too long. She was nice, very efficient and to the point! She scanned me again and I think your daddy arrived whilst she was scanning me. He made me feel strong, I had to stay strong so he didn’t get more upset. We were told you were very very poorly and she needed to speak to a neonatal cardiologist in London. She to,d me I would be having you by c section later that day!!! From the scanning room they took me up to triage, I don’t know why, they tried to listen to your heart rate but the machines couldn’t count it, it was going about 300bpm. I was quickly moved to delivery suite and they started prepping me for an emergency c section. I signed the consent form, I spoke to the neonatal consultant who told me how poorly you would be. I put a surgical gown on. I called your daddy’s mum and dad so they could come. I tried not to stress my mum as she was looking after the big kids. She didn’t have a mobile then so I couldn’t text her. I was trying to contact my dad but he was working. Your daddy and I some how stayed relatively calm! We started making a list of things I needed. Then the dr came back and said kings hospital in London suggest giving me a medication that will hopefully slow your heart and wait and see if that works before delivering u. An appointment was made for 3 days later at great Ormond street hospital with a neonatal cardiologist. I was given the tablet and moved up to the maternity ward. We Had to call everyone and no c section today!!

The next 3 days were awful, a midwife told me the dr said ther was a high chance you would die before you were born. I was devastated. I was alone because your daddy had to go home to look after the big kids. I couldn’t stay strong when I was alone. I was so scared I was going to loose you. I lived from one small movement from you to the next and by praying the medication will work. I hardly slept, I talked to you constantly, I asked you to be strong, I told you all about your big brother and sister. The midwives asked me how I was I would say if your hearts still beating I’m ok. I was to,d you had only 5% chance of surviving. Well, that’s better then no chance, I was determined to not give up on you. I would not give up on you, I refused to give up hope. i decided until we see the experts at gosh on Monday there was still hope. The widwives actually called me delusional. I had some very low moments, I sobbed thinking about telling Joscelyn you had died, I couldn’t breath at the thought of burying you. I thought about all the wonderful new moments of getting to know a newborn baby and never wanted something so much before. I couldn’t decide if I loved kissing new babies noses or cheeks the best. I constantly held my tummy in a way to cuddle you and I begged you to survive. I thanked you for every tiny movement you let me feel, it was like you were saying I’m still here!

Monday morning finally arrived, I force fed myself some toast and waited for the hospital transport. The dr wanted to scan me one more time to see if there was any change, no change. At least you hadnt got worse! I asked the dr To see if you were a boy or girl and she tried but u were Keeping it secret! I was strangely excited, some answers should be given at last. I took a bag with me, I was certain I would be having you in London and not returning to lister hospital. The hospital transport driver talked non stop. It was a bright warm sunny day. I was wearing my pink checked maternity shirt I bought for my birthday. I felt like I was on my way to a really important exam. I guess I kinda was!! At gosh we found the cardiology department and didn’t have to wait long for the scan. The scanning room was really big, a lady scanned me, I know she wasn’t the dr so isn’t ask her any questions. When she had finished she asked us to waitron the next room. It was a windowless room with a coffee table with a box of tissues on. I told your daddy it probably wouldn’t be good news, I wanted to prepare him. It felt like ages before the dr came in. I don’t actually know what we did why we waited. I think we reassured each other, still hope till they said otherwise. The dr arrived and asked to scan me more. He said he wanted to make sure he has seen every thing. I felt like he wanted to be certain before he told us bad news. We asked him if he could see if you were a boy or girl but nope! you still wouldnt tell us!!!After we were led back into that awful room for and another wait. He came in with the lady and the only real sentence I remember him saying is the is good hope. I was shocked, I made him repeat it so I was certain I hadn’t misheard. He wanted me to deliver ASAP at UCLH and suggest we go to the cafe while they organise it. We were on such a high. Before we had chance to eat or drink the lady found us inthe que to tell us the transport was ready to take us to UCLH! Amazing.
We arrived at UCLH and found our way to the scanning department. The receptionist knew who we were straight away and led us into a treatment room. We had lots of forms to fill out which daddy helped with as my brain wasn’t working properly. I had bloods taken and then went in for a scan. The consultant was lovely, he talked us through what he was looking at. He said my baby had developed really well so the SVT must have started later. We asked him if u were a boy or girl but you still wouldn’t let us know! The consultant advised us that you needed to be delivered as soon as possible and it would probably be the following morning. I wanted you to be born right away. I was still so worried about you. The nurse left us to speak to the neonatal unit to see if they had space for you. When she returned she asked if we were ready to have a baby!!! She took us straight to the delivery suite! Lucky we didn’t have time to eat at gosh!
The delivery suite was very smart. There was a couple of women in recovery with their babies with them. I was jealous. We put our theatre gowns on and took a few pics, your daddy looked funny! then was taken into theatre. There was a door in the theatre leading to another room. I was told that’s where they would take you once you were born. The epidural was horrible! Before you becoming poorly a c section was my worst nightmare! Particularly the epidural, but there was no way I would be put to sleep and miss your birth!! Once the epidural was in I quite enjoyed he sensation of warmth and calm in my legs lol. Made me feel quite sleepy! It didn’t take long for you to be born. It was early evening. They said ts a boy!!!! You were pink and all scrunched up! You had loads of dark hair like your big sister and I just new you would have brown eyes like her too. They took you through the door to them team of nnu drs and nurses. We had to wait to hear any news. A dr came and took daddy to meet you and daddy took some pics. You looked quite well despite needing a breathing tube and over 300ml of fluid to be removed from your tummy. Your heart was beating normally! The surgeons took ages to finish with me. Daddy stayed with me and kept me calm. Once I was in recovery I had to wait till a staff member could take me to see you. It was during shift change so must have been between 8-9. The nurse pushed my bed to your incubator, you were cot 9 in intensive care. I didn’t cry when I saw you. I was so relieved you had survived birth!!! You were fighting the sedation they had given you. You had a breathing tube in and lots of tubes and wires. You heart was still beating normally. We took pictures are tried to think of a name. I considered Bruce lol but daddy didn’t like it! It was getting late and I was so tired and in pain so the nurses took me up to an antenatal ward. Daddy wasn’t allowed to stay so had to make his way home. He must have been so tired. I got little bits of sleep but couldn’t stop thinking about you. I planned to be up and walking as soon as they said I could.
The next mornin the nurse helped me get up. It was determined to get down to see you but over did it and nearly fainted in the shower! A dr that was looking after you came to get me and told me your hear rate had gone into SVT. She said they tried giving you a medication but it hadn’t worked. The next thing to try was to cool you down and shocking you. I treated it as very matter of fact. I thought This is what they needed to do and once they did it you would improve. As soon as a nurse was available they walked me down to see you. Daddy was on his way in. You were under an ultraviolet light as you were jaundice the light is very bright so you had little foam glasses on. You were on a cooling mat and they had reduced your temperature. You had a huge white sticker on your chest that had delivered the shock to your heart. You had so many machines around you and so many wires and tubes. You were completely still and cold. I placed my hands on your head and around your bottom and legs to try and imitate holding you. I think it was such a good job I was on strong painkillers and feeling rather vague because I don’t know how I coped with seeing you like that. We decided on the name Edward we had always like it but was worried it was too popular. It suited you though! I sat by your incubator for as long as I could but had to go back to my ward for my painkillers and some food and drink and meet your daddy. I was so worried about you I couldn’t think about any thing else. I couldn’t think straight. I remember the drs and nurses explaining things but I couldn’t take them in. I hated every single time I had to walk away from you.

Continued.

We were warned that life in the nnu was lived minute to minute. That was so true. The drs had got your heart to beat correctly but your kidneys weren’t functioning so you had to much extra fluid all around body. My fingers left imprints on you where ever I touched. Your eyes were swollen, your feet where like balloons. The fluid was around your lungs making it difficult for you to breath. But your heart was beating correctly, we had to hold on to any good thing. The next few days where such a blur. I sat by your incubator day and night, I told you nursery stories, I couldn’t remember the ending to the 3 Billy goats gruff or goldilocks and the 3 bears so I made up happy endings. The nurses must have thouGht I was crazy! I was taking as much painkillers aspossible and to be honest, they made me feel quite floaty! The drs wanted to start giving you breast milk through your feeding tube but I was sooo exhausted and stressed nothing was happening. That made me feel worse I couldn’t even do this one thing that you needed from me. We fell into a strange routine of sitting with you, quickly eating then rushing back to you, trying to express, then rushing back to you! You were cold for about 48 hours then the drs decided to warm you up. Fantastic! We hoped for the best. They took you off the uv lights as well and took off a lot of the wires. Your heart had been beating correctly since Monday night. They wanted you to be warm to help your other organs start functioning. Your nanny and aunts came to visit us, it was nice to have some company a d to show off my beautiful boy.

Your 4th night you took a bad turn. I was sitting with you all evening, they placed an EEG monitor on your head as they worried you had a seizure. It involved a lot of glue all over your lovely hair and a really cute cap! Your heart was beating faster too but they said it was because you were warm. It was lovely to feel your warm body. Your heart rate got faster though and they realised you were back in SVT. I stayed by you all evening. I was you move a bit jerky and told the nurse u were doing it. It looked more like wind then a seizure. The EEG showed no abnormal activity so they took it off, a small victory! The drs asked gosh cardiologist about what to do with your heart rate. I stayed up as long as I could with you but I was so tired. At about 00:30 I went back to my ward. Only a couple of hours later a dr woke me up. Your heart was still in SVT, you were getting more and more poorly. I didnt know what to do, daddy was at home, i didnt know whether to call him or not. I hated telling him bad news. I called him and told him u werent doing good and I would update him in the morning. They tried giving you medication but I didn’t work. They tried shocking you 3 times, but it didn’t work. They decided to cool you down again and shock again once you were cold. I thought you were going to die. I cried, actually I completely broke down. I couldn’t hold anything in, I said to the nurse I was scared you would die and she replied, yes, he might. I sat by you for a few more hours while they were cooling you but I couldn’t take it any longer. I couldn’t stop crying, I couldn’t be positive. The nurses suggested I tried to sleep and promised they would wake me before they shocked you again. I obediently went to my ward. I think I slept. I got back down to see you while they were getting ready to shock you again. I kissed you and went to the waiting room. I expected to wait at least half an hour but 5 minutes later they to,d me it worked. Your heart was beating normally again! That night was the worst night of my life but the best morning ever! We had to wait to see the cardiologist and it was a loooong wait. We were worried that your heart was in a worse condition then initially thought. So, your not even a week old and you have been cooled twice, shocked 7 times, you haven’t opened your eyes, you haven’t been cuddled and you haven’t been fed.goes against any mothers instinct.

Tbc ….

]]>https://run4edward.wordpress.com/2013/02/28/edwards-birth-story/feed/0c1aire83Run run as fast as u canhttps://run4edward.wordpress.com/2013/02/26/run-run-as-fast-as-u-can/
https://run4edward.wordpress.com/2013/02/26/run-run-as-fast-as-u-can/#respondTue, 26 Feb 2013 18:20:17 +0000http://run4edward.wordpress.com/?p=21]]>Getting ready for my run tonight. It’s cold, dark and wet. Roll on summer time please!!!]]>https://run4edward.wordpress.com/2013/02/26/run-run-as-fast-as-u-can/feed/0c1aire83Keep running!https://run4edward.wordpress.com/2013/02/24/keep-running-2/
https://run4edward.wordpress.com/2013/02/24/keep-running-2/#respondSun, 24 Feb 2013 07:51:59 +0000http://run4edward.wordpress.com/?p=20]]>Well, I can’t believe how popular my wonderful baby’s story has spread it is so amazing how far it went!
It’s been a while since I updated because I started a Facebook group too which seemed to reach people quicker. Then I noticed an article had a link to my blog! Great!

We are still waiting for Edwards results. He had a 24 hour heart monitor last week and we are hoping for the results this week.
Edward is eating 3 meals a day and getting bigger he is double has tripled his weight since coming home and still breastfeeding!!!!

Phil and I are still running. I’m really proud of us. I’m running 5.63k every other day. I went running last night and I beat my previous time by 5 mins!!!! Every time I go I push myself to beat my previous time. Phil is doing just as well. I don’t honk I ran this far at school, or ever!!! It will be amazing when we achieve our 10k in may and then half marathon in the end of July.

]]>https://run4edward.wordpress.com/2013/02/24/keep-running-2/feed/0c1aire83Nothing to reporthttps://run4edward.wordpress.com/2013/02/10/nothing-to-report/
https://run4edward.wordpress.com/2013/02/10/nothing-to-report/#commentsSun, 10 Feb 2013 21:44:02 +0000http://run4edward.wordpress.com/?p=19]]>Not much to say. Been to phials parents house for the weekend. Had a lovely time but its always good to get back to your own bed
Had a break from the diet but still did a work out. Having trouble finding a suitable sports bra as I’m rather big busted. Hoping to buy one tomo.
Edwards story should be appearing a a paper soon, have to make his Facebook page and ask the news agency if they will publish the Facebook page. Will be a good way to get sponsorships.
Edwards doing well with the weaning, love this stage.
Here is a pic of Edward. X

]]>https://run4edward.wordpress.com/2013/02/10/nothing-to-report/feed/2c1aire8320130210-214352.jpgNearly done :)https://run4edward.wordpress.com/2013/02/06/nearly-done/
https://run4edward.wordpress.com/2013/02/06/nearly-done/#respondWed, 06 Feb 2013 21:17:18 +0000http://run4edward.wordpress.com/?p=17]]>Well it’s day 27 out of 30! I have nearly completed the 30 day shred!!! I’m a step closer to running the half marathon.
Still need to set up my just giving page and contact UCLH about how much the cooling equipment is because I want an amount to aim for.
I was looking a pictures of Edward in hospital today. My mum won’t look at them but I can’t pretend it didn’t happen. She is helping me sort out my abundance of baby clothes that I find so hard to get rid of. Looking at all his tiny baby clothes bought tears to my eyes. Whilst sorting them I was being brave, but now I have decided I can’t get rid of them all. I’m too sentimental, I want to keep the ones that hold the most memories and make a patchwork quilt out of them eventually. I can’t even bring myself to thing about cutting them up yet. So thank god for vacuum pack bags and the loft ]]>https://run4edward.wordpress.com/2013/02/06/nearly-done/feed/0c1aire83More about Edwardhttps://run4edward.wordpress.com/2013/02/05/more-about-edward/
https://run4edward.wordpress.com/2013/02/05/more-about-edward/#respondTue, 05 Feb 2013 22:45:52 +0000http://run4edward.wordpress.com/?p=16]]>Well so far on this blog I have only been talking about myself. So I thought I would talk about my special baby this time.
He is doing fabby! Started weaning last week and today we gave him some dinner too. He really enjoyed his cauliflower and broccoli cheese baby dinner. Next week we are taking him to an appointment with his cardiologist at great or and street hospital. He will have a mobile heat monitor put on. If his rhythm is normal for 24 hours we can take him off one of his meds. I’m so excited!! He is on 2 different meds. Propanalol and amiodarone. We are hoping to stop the amiodarone.

Also, day 26 of the shred done

Bed time. X

]]>https://run4edward.wordpress.com/2013/02/05/more-about-edward/feed/0c1aire83Keep running!!!https://run4edward.wordpress.com/2013/02/05/keep-running/
https://run4edward.wordpress.com/2013/02/05/keep-running/#commentsTue, 05 Feb 2013 22:41:39 +0000http://run4edward.wordpress.com/?p=15]]>February 4th. Second run.
Well I did day 25 of the shred then went for a run. It was bloody cold and windy! Makes every thing spooky. I wanted to beat my first day. I some how didn’t hear my personal trainer (c25k app voice) say I was half way and ened up going further! I realised and turned back but was still a good 10 mins walking distance away from home when I finished the 5 min cool down! My total distance was 2.27miles. Doing 14:29 min/mile.
Trying to find a half marathon. Can’t choose where. I want to go to Cornwall and have mini holiday too. But we have asked if relatives will join us and my sister don’t want to go that far. So should we pick a closer one and have a seperate holiday???

Nearly at the end of the 30 day shred and hubby decides he wants to do it. I can’t lie, I’m enjoying watching him suffer!!!

]]>https://run4edward.wordpress.com/2013/02/05/keep-running/feed/2c1aire83My first run.https://run4edward.wordpress.com/2013/02/05/my-first-run/
https://run4edward.wordpress.com/2013/02/05/my-first-run/#respondTue, 05 Feb 2013 22:39:51 +0000http://run4edward.wordpress.com/?p=14]]>The stars where out. I ran 1.79 miles I’m please with my first run. It was bloody cold. Did day 23 of the shred first!]]>https://run4edward.wordpress.com/2013/02/05/my-first-run/feed/0c1aire83Day 22 of the shred!https://run4edward.wordpress.com/2013/02/05/day-22-of-the-shred/
https://run4edward.wordpress.com/2013/02/05/day-22-of-the-shred/#respondTue, 05 Feb 2013 22:38:57 +0000http://run4edward.wordpress.com/?p=13]]>Started using my fitness app too which is great! Lost 5lbs in the first week. Really feeling the difference in my fitness! Only 7 days to go!
Building up the courage to start c25k. My first steps towards the half marathon. Not chosen which half marathon to do. Will let u know as soon as we decide. It will be in August tho.
He is my mid way pic taken on day 14 I think. Excuse the stupid pose! I was feeling pleased with myself!

]]>https://run4edward.wordpress.com/2013/02/05/day-22-of-the-shred/feed/0c1aire8320130205-223826.jpgReady, get shred, go!https://run4edward.wordpress.com/2013/02/05/ready-get-shred-go/
https://run4edward.wordpress.com/2013/02/05/ready-get-shred-go/#respondTue, 05 Feb 2013 22:36:46 +0000http://run4edward.wordpress.com/?p=11]]>I found jillian Michael’s 30 day shred and in gonna get shredded! Never watched biggest looser before, it’s fab! Just what I need to motivate myself. I’m challenging myself to do the whole 30 day shred. I have a before pic. (Below) Will do one every 10 days. It’s well hard!